Abstract
Chapter three provides an in-depth ethical analysis of what types of incidental findings (IFs) from genomic research or clinical testing should or should not be disclosed to individuals. It begins by providing a lucid definition of IFs and delineating the scope under consideration. The chapter then examines two categories where disclosure is judged as obligatory: firstly, informing potential recipients about the likelihood of IFs arising, and secondly, disclosing life-saving IFs associated with actionable genetic conditions. A key focus is the controversial issue of misattributed paternity IFs, which reveal that the assumed father is not the biological father. Two contrasting perspectives are presented: one prohibiting disclosure to the assumed father based on Islamic jurisprudential principles and societal ethical concerns, while another minority viewpoint asserts the obligation to disclose, with supporting arguments outlined, and accompanied with critical commentary. Subsequently, the chapter goes on to analyze IFs recommended (praiseworthy but not obligatory) for disclosure, employing the theoretical framing of the Islamic ethical concepts around seeking/providing medical care, with the American College of Medical Genetics (ACMG) list serving as an applied example. Additionally, a category of IFs judged as reprehensible (blameworthy but not prohibited) to disclose is examined through the lens of distant lineage and demonstrated through the applied case of genetic ancestry findings.
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To arrive at a normative judgment on which Incidental Findings (IFs) should or should not be disclosed, it is imperative to establish a precise definition of “IFs” first. This necessity, particularly within the intricate context of genetics and genomics, aligns with a widely accepted legal maxim among Muslim jurists, asserting that “ruling regarding a matter is contingent first upon the perception thereof” (al-ḥukm ʿala al-shayʾ farʾ ʿan taṣawwurih) (Ghaly 2020, 82). So, the commitment to developing accurate definitions for technical terms and delineating their scope is deeply rooted in a centuries-old tradition in Islamic scholarship (Mitwallī 2018). Specifically, in the context of religious rulings derived from scriptural sources, authoritative works in the discipline of legal theory (uṣul al-fiqh) consistently devote a distinct chapter to this issue under the title “al-dalālāt (indications or implications)” (‘Abd al-Ḥamīd, 2012).
When it comes to IFs as a technical term, the U.S. Presidential Commission for the Study of Bioethical Issues (hereafter, Bioethics Commission) rightly acknowledged the challenge of arriving at a precise definition for this concept. This challenge arises from the fact that different groups have adopted varying definitions of IFs (Presidential Commission for the Study of Bioethical Issues, 2013, pp. 25–29).
Incidental Findings (IFs) as a Technical Term
In this study, the concept of Incidental Findings (IFs), sometimes named secondary findings, and its scope will be defined on the basis of specific parameters. These parameters have been carefully selected and refined to establish a robust foundation for systematic and coherent ethical analysis.
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The findings pertain to the analysis of one’s genetic makeup, whether it involves the entire genome, exome, or specific genes. Therefore, findings resulting from the use of medical images to examine specific organs, such as computed tomography (CT) or magnetic resonance imaging (MRI), may not necessarily fall within the scope of this study. However, some of these results may be relevant to the ethical analyses presented herein.
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The findings fall outside the scope of the original research objective or the clinical test being conducted. Moreover, these findings are not actively sought or intended by the involved researchers or clinicians, and the same holds true for the respective research participants or patients.
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The findings pertain to either a research setting or clinical context. Whenever the differences between these two contexts morally matter, a distinction between the two will be highlighted. The commercial or Direct-to-Consumer (DTC) context falls outside the scope of this study because IFs in this particular context entail significant elements of financial and commercial ethics that go beyond the focus of this study.
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The findings are not necessarily exclusive to the narrow scope of health-related aspects but are broad enough to include those that relate to one’s overall well-being. Although researchers and clinicians in the fields of genetics and genomics primarily focus on healthcare, the IFs they come across can have serious and morally relevant implications that influence one’s overall well-being in the ethical rather than medical sense.
(A) Obligatory
Using two concrete examples, this section will elaborate on when and how the disclosure of IFs can be judged as obligatory.
A-1 Likelihood of IFs
The first example pertains to the minimum ethical obligation towards potential recipients of IFs, encompassing patients and research participants. The main thesis is that individuals should be adequately informed in advance that IFs may arise. This thesis is rooted in the information briefly outlined earlier, particularly in the “Metaethics” section, and will be expounded upon in this section to underscore the points with relevance to this thesis.
One of the fundamental tenets of Islamic creed is the belief that man, including the body and all capacities and faculties therein, is exclusively created by God. The Quran is replete with numerous verses, which are too many to be enlisted here, conveying this message in various ways. Some verses emphasize the worship of God as the Creator of the human species and other creatures (e.g., 2:21;Footnote 1 45:04Footnote 2). Other verses highlight man’s inherent weakness and powerlessness, emphasizing that it is only God who bestows faculties such as hearing, eyesight, and organs like eyes, tongue, and lips (e.g., 30:54;Footnote 3 23:78;Footnote 4 09:8–9;Footnote 5 67:2Footnote 6). Another group of verses underscores God’s marvelous work in fashioning man in a perfect shape and form (e.g., 95:04;Footnote 7 23:12–14;Footnote 8 15:28–29Footnote 9).
Aligned with these theological premises, Muslim jurists formulated several normative principles that apply to a broad spectrum of rulings. The most pertinent of these principles and legal maxims to the topic of IFs include the following:
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The human body has sanctity (ḥurma) and inviolability (maʿṣūmiyya)
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God is the sole Owner of the human body.
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Individuals are not owners of their bodies but rather trustees of God.
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No one is allowed to dispose other people’s rights or properties without their permission.Footnote 10
The essence of these principles and maxims is to show that taking actions related to the human body must take into account two fundamental rights or claims. The first pertains to God, in the capacity of the Creator of human body, and the second claim relates to the individual, serving as the body’s trustee (Abū Ghudda, 1982, p. 789; Jundī and ʿAwaḍī, 2005, p. 262; Sharaf al-Dīn, 1983, pp. 47–48, 1987, p. 128; Taftazānī, n.d., vol. 2, p. 309; Tanṭāwī, 1995, p. 312).
Conducting research or performing genome testing for the purpose of generating generalizable knowledge that can benefit numerous individuals or populations is, at the very least, considered a permissible act from an Islamic perspective. The categorization of this act may also shift into other categories such as recommended or mandatory, contingent on specific circumstances. The same principle applies to testing someone’s genome for diagnostic or therapeutic purposes. Consequently, the research or testing leading to IFs is rooted in an action for which God, the Lawgiver, has granted permission (idhn al-Shāriʿ).Footnote 11 Following divine authorization, it becomes imperative to seek permission from the autonomous person designated by God as the trustee of their body, encompassing the genome within. Acquiring an individual’s consent, as elucidated by Muslim scholars, necessitates a clear and adequate explanation of the situation at hand, ensuring that the person in question is sufficiently well-informed (ʿalā bayyina) to make an autonomous decision (Jundī and ʿAwaḍī, 2005, p. 262; Sharaf al-Dīn, 1983, p. 51, 1987, pp. 50–51).
Accessing one’s genome often opens the door to a wealth of information, much of which may extend beyond the intended scope of the originally planned research or clinical test. This implies that the likelihood of encountering IFs is almost inevitable. In order to obtain a permission premised on sufficient clarity and would thus qualify as informed consent, the consenting process should involve making the respective person aware of the likelihood of IFs. Beyond the juristic aspects related to respecting people’s autonomy, disclosing the probability of IFs from the outset holds various benefits for all involved stakeholders. As far as the perspective of the patient or research participant is concerned, having this information empowers these individuals to develop better plans and prepare well for potential ethical questions or dilemmas that may arise. In the context of medical treatment, Muslim scholars emphasized the Lawgiver’s permission not only to eliminate existing harm but also to take precautions against future or anticipated harms, whether caused by human or non-human factors (Shāṭibī, 2003, vol. 2, p. 261). Preemptively disclosing information about the likelihood of IFs also contributes to improving the professional image of genomic researchers and clinicians as individuals bound by fiduciary duty, particularly in upholding the value of veracity (Jundī & ʿAwaḍī, 2005, p. 61; Ruhāwī, 1992, p. 287).
A-2 Life-Saving Information
In accordance with the teachings of the Quran, as articulated in verses such as 2:173,Footnote 12 Muslim scholars unanimously agree that preserving human life is a fundamental value that can transform into a stringent religious obligation, the neglect of which would be considered a sin. This obligation arises under specific conditions, particularly when an individual faces a life-threatening situation and can be effectively saved without jeopardizing the life of the rescuer. This perspective aligns with the overarching objective of Sharia, namely, the preservation of life (ḥifẓ al-nafs), which is expounded upon in various disciplines within the Islamic tradition.
While this obligation is indiscriminately applicable to all members of society capable of saving someone’s life, scholars assert that it becomes more compelling for those possessing specialized knowledge and professional capacity enabling them to provide efficient lifesaving support. It is important to note that if providing such support would ultimately endanger the life of the one providing assistance, it may no longer be deemed a religious obligation. This is due to the principle that protecting one’s own life is also an obligation, with some scholars contending that it holds even greater weight than the duty to save the lives of others (Ibn Qudāma, 1968, vol. 9, pp. 421–422; Qurṭubī, 1964, vol. 2, p. 226; Sharaf al-Dīn, 1987, p. 103; Wizārat al-Awqāf wa al-Shuʾūn al-Islāmiyya, 1984–2005, vol. 5, pp. 195–96).
In consideration of the preceding discussion on preserving human life, we contend that it is incumbent to disclose the IFs that meet the following two criteria:
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The IFs slated for disclosure are scientifically validated, clinically significant, and actionable. In essence, their revelation typically precipitates life-saving interventions that are accessible and available.
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The disclosure of these IFs will not jeopardize the life of the involved researcher or clinician.
As for the first criterion, certain IFs relate to a life-threatening condition that can be averted though preventive measures. According to the study of the U.S. Presidential Commission, the genetic predisposition to malignant hyperthermia (MH) is an example of such potential lifesaving IFs. MH is a treatable condition associated with severe and life-threatening reactions to certain kinds of anesthesia (Presidential Commission for the Study of Bioethical Issues, 2013, p. 139, 87). Regarding the second criterion, it appears unlikely that disclosing lifesaving IFs would put the researcher’s or clinician’s life at risk. However, should such a scenario arise, then the disclosure of the IFs would not be judged as obligatory. Meeting both criteria establishes the obligation to disclose the respective IFs, whose omission would constitute moral negligence and entail a religious sin. The same line of reasoning also extends to IFs associated with communicable and contagious diseases, which pose a public health risk that endangers not only the life of infected individuals but also many others in society. Given their potential to prevent public harm, the ethical obligation to disclose such IFs becomes even more stringent.
In alignment with the outlined examples where the disclosure of IFs is deemed obligatory, we contend that relevant institutions, such as national genome projects, biobanks, research centers, and hospitals, should formulate their own catalog of obligatory actions concerning IFs. This catalog ought to be properly discussed with potential recipients of IFs during the informed consent process. Refusal of some items of listed obligatory disclosures may serve as an exclusion criterion from participation in the research study. In the clinical context, the Institutional Review Board (IRB) or equivalent consultative bodies should be involved in determining the most appropriate course of action for patients who refuse such obligatory disclosures, tailoring decisions to the unique circumstances of each case.
(B) Prohibited: Misattributed Paternity
While conducting family genetic studies, researchers may incidentally come across results showing that one or both of the rearing parents are not the genetic/biological parents. For example, if a child is affected by a recessive disorder and the mother but not the father is a carrier, this would imply that the mother’s husband is not the genetic father. If neither of the parents is a carrier, this would suggest the possibility of undisclosed adoption, embryo donation, mix-up of children during an in vitro fertilization (IVF) process or at fertility clinics, etc. Similar IFs may arise during genetic analysis conducted as part of clinical care or reproductive planning for couples or families. Thus, such IFs may be found in both research and non-research settings. Besides misattributed paternity,Footnote 13 IFs can also reveal misattributed ethnic or cultural identity in ancestry studies or negate the genetic basis of tribal affiliation (Wolf et al., 2008, p. 222).
In secular bioethical discourse, misattributed paternity has been among the earliest types of IFs to be examined (Wolf et al., 2008, p. 220). After about three decades of deliberations, the (non-) disclosure of misattributed paternity remains a controversial issue, lacking a unanimous consensus among individual bioethicists or bioethical institutions. In terms of disclosing such IFs to the assumed father, contributors to these debates can be broadly divided into two groups. One group, seemingly representing the majority position, opposes the disclosure of these IFs. They argue that such disclosure would breach the mother’s right to privacy and protection from harm, and it could harm family harmony and disrupt its unity. The advocates of this position assert people’s right not to know, as these findings eventually remain incidental, with no fundamental obligation to inform people about. To minimize ethical predicaments in this regard, some suggest a targeted approach in both genetic/genomic research and clinical tests to reduce the likelihood of encountering such sensitive IFs as much as possible. This targeted approach is recommended by various international institutions including the European Society of Human Genetics and the UK-based Public Health Genomics (PHG) Foundation (Presidential Commission for the Study of Bioethical Issues, 2013, p. 140). In contrast, the other group advocates for the disclosure of these IFs, arguing that disclosure is essential for the autonomy of the child and presumed father. They also contend that physicians have a general duty to disclose such information, asserting that non-disclosure would undermine trust in medical professionals, because it might be perceived as paternalistic when doctors make value judgments about what is best for a family (Hercher, 2023, p. 2; Lowe et al., 2017, pp. 234–235).
This section will specifically address the particular case of IFs related to misattributed paternity, where the assumed father is not the biological father. Under the title “Prohibited Disclosure”, we will argue that the disclosure of nonpaternity IFs to the assumed father should be classified within the above-explained category of prohibited acts. Although Islamic discourse on this specific issue is still in its infancy, this position seems to be gaining an increasing support (Ghaly et al., 2016a, pp. 35–43; Ḥājj, 2017, pp. 160–165; Yāsīn, 2019, p. 114). On the other hand, an opposing perspective advocating for the obligatory disclosure of these IFs has recently emerged, as outlined in a recently published book (Ṣāliḥ, 2020, pp. 253–282). This perspective and its reasoning will be presented under the heading “Obligatory Disclosure” by the end of the section.
B-1 Prohibited Disclosure
For a systematic presentation of the arguments supporting this position, they will be divided into two main categories. The first category of arguments relates to the disciplines of Islamic jurisprudence (fiqh) and Islamic legal theory (uṣūl al-fiqh). The second category comprises the arguments stemming from the fields of medical and social ethics.
B-1.1 Juristic Arguments
As for the first category of arguments, comprehending the prohibited disclosure of this specific type of IFs to the assumed father requires an initial exploration of a central concept in the Islamic tradition—nasab, often translated as lineage or filiation. This concept has been recurrently addressed in the Quran and Sunna and extensively analyzed in the disciplines of fiqh and uṣūl al-fiqh. Within the uṣūl works, lineage (nasab) is discussed within the higher objective of Sharia related to safeguarding offspring (nasl). In fiqh works, determining one’s lineage, including paternity and further lines of kinship, is crucial for implementing a wide range of juristic rulings. The scope of these rulings extends beyond the limited range of family affairs, intersecting with other domains, including financial and penal aspects (Group of Scholars, 1983–2006, vol. 1, p. 126, vol. 40, pp. 254–255; Quradāghī & Muḥammadī, 2008, pp. 342–343; ʿUwayd, 2020, pp. 161–172). Because of this religious dimension of nasab, ethical deliberations on the possible disclosure of nonpaternity-related IFs cannot be restricted to balancing the civil rights of the mother, the assumed father and the child. These deliberations should also examine the religious obligations emanating from the nasab relationship towards the Lawgiver, i.e., God (Ibn al-Qayyim, 2006, vol. 2, p. 602).
With this understanding of the multidimensional concept of nasab, it would be easier to comprehend that biological or genetic relatedness is not the exclusive determinant of fatherhood or man-child nasab in Islamic jurisprudence. Many early and contemporary Muslim jurists held that biological relatedness may not even be the most important factor, certainly not the prima facie basis for establishing the prospective child’s fatherhood and the ensuing kinship networks, together with associated religious obligations and rights. Muslim jurists agree that the couple who plan to have children should first establish a marital relationship or wedlock (firāsh)Footnote 14 so that the resulting children shall automatically possess a religiously recognized lineage (nasab sharʿī), upon which related juristic rulings can be premised (Ghaly et al., 2016a, p. 42, 2020, pp. 21–22,; Group of Scholars, 1983–2006, vol. 32, pp. 80–82; Yāsīn, 2019, pp. 108–110). This marriage-based framework not only aligns with religious norms but is also a fundamental aspect of the lived reality for many Muslims and the codified laws observed in numerous Muslim-majority countries. The existence of a recognized marital relationship is often a prerequisite for the legal entitlement of children to various rights including inheriting property from their parents (Fayḍī, 2013; Laklamī, 2021; Sachedina, 2009, p. 103, 107 ; Welchman, 2007, pp. 142–150).
Once this marriage-based fatherhood is properly established and duly recognized by the husband of the child’s mother, it cannot be easily challenged or negated even if the woman committed adultery. This widely accepted position among Muslim jurists is premised on a famous tradition attributed to the Prophet of Islam, which reads “The child belongs to wedlock (firāsh) and the stone is for the adulterer”. Muslim scholars have interpreted the tradition to imply that the husband of an adulterous woman will retain the exclusive right to the child’s paternity. In contrast, the adulterous man will not be entitled to any rights in this regard and is metaphorically given ‘stone’ (meaning nothing). According to an alternative interpretation of the same tradition, the adulterous shall be ‘stoned to death’; the prescribed punishment for adultery, if he was married. For these jurists, the fact that the woman committed adultery does not conclusively prove that she was impregnated by the adulterous man, even if apparent physical resemblance (shabah) was observed between the child and the adulterous man (Ghaly et al., 2020, p. 22; Group of Scholars, 1983–2006, vol. 40, p. 238; Yāsīn, 2019, pp. 108–11).
Another important argument supporting this position is that early Muslim jurists were already aware of the biological contribution of both the husband and wife in shaping the physical makeup of their child. The terminology used in Prophetic traditions was al-māʾān, which literally means two waters or two fluids.Footnote 15 In modern commentaries on these Prophetic traditions and related bioethical discussions, the “two waters” are often interpreted as the male sperm and female egg (Ghaly et al., 2020, p. 22; Lashīn, 2002, vol. 2, p. 308; Madhkūr et al., 1985, p. 59, 109, 150; Ṣāliḥ, 2020, p. 281). Despite this, the mainstream position among early Muslim jurists is that man’s biological contribution alone, without wedlock (firāsh), is insufficient to establish him as the religiously recognized father of a child born to a woman married to another person (Ibn al-ʿArabī, 2003, vol. 3, p. 447; Juhanī, 2010, pp. 13–14). This view persisted even with the advent of modern DNA fingerprinting, which provides nearly conclusive evidence of biological paternity. Thus, the mainstream position among Muslim jurists remained steadfast; marriage-based nasab should be the norm for establishing father-child kinship. Once this religiously recognized fatherhood is established, DNA fingerprinting cannot be used to question it, even at the request of the husband. If the husband contends that the born child is the result of his wife’s adulterous relationship, he should resort to the judiciary procedure of mutual oaths of condemnation (liʿān), as outlined in the Quran (46:6–9)Footnote 16 and Sunna and further detailed in juristic manuals. While not disputing the scientific reliability of the DNA fingerprinting, the majority of Muslim jurists stressed that this new technology cannot completely replace liʿān and should not be employed to contest an already established marriage-based nasab (Kaʿbī, 2006, pp. 376–514; Quradāghī & Muḥammadī, 2008, pp. 367–369).
Building upon the aforementioned rationale, the advocates of this position stressed the critical distinction between biological or genetic paternity on the one hand and the religiously recognized father-child relationship or nasab, on the other hand. The prima facie basis for the latter is marital relationship and not genetic relatedness.Footnote 17 Although both types typically align in the prevailing reality of Muslim couples, jurists explain that there may be cases where the woman’s husband will not be the biological father. In such cases, the religiously recognized father will be the woman’s husband, not the biological father. Therefore, disclosing the nonpaternity IFs will only cause harm and ultimately will not change the religiously recognized nasab between the respective child and the woman’s husband (Yāsīn, 2019, pp. 111–112). Additionally, the context of IFs related to nonpaternity has to do with families who have what jurists call “established lineage (nasab mustaqirr)”, where children are born within wedlock (firāsh). As demonstrated earlier, challenging an established lineage in such cases is extremely difficult, with only the husband having the right to initiate the judiciary procedure of liʿān under strict conditions.
B-1.1 Ethical Arguments
In addition to the aforementioned juristic arguments, proponents of the “Prohibited Disclosure” position underscored ethical concerns related to societal, medical, and professional ethics, although these aspects were often not given due attention.
Concerning medical ethics, the primary consideration revolves around the moral values that should govern the physician–patient relationship or that between the researcher and research participant. In contrast to a judge, who is professionally obligated to settle paternity disputes when a case reaches the court, such a role lies outside the purview of the clinician or researcher who encounters a nonpaternity IF. On the contrary, the physician is morally bound, by profession, to uphold the privacy of patients and the confidentiality of their information (Ghaly et al., 2016a, p. 43; Ḥājj, 2017, p. 1601; Yāsīn, 2019, p. 112).
This rationale aligns with centuries-old Islamic deliberations on medical confidentiality. Such discussions trace back to early works in the genre of adab al-ṭabīb (etiquettes of the physician), where the ability to keep secrets was introduced as one of the characteristics of the virtuous physician (Rāzī, 1977, p. 27; Ruhāwī, 1992, p. 287). Similar insights also figure in the modified and monotheism-friendly versions of the Hippocratic oath, which has been integrated into the medical profession throughout the history of Islamic civilization. The Arabic version of the physician oath included phrases such as, “As for whatever I witness during the treatment of patients or hear about outside the time of their treatment, regarding matters that should not be spoken of openly, I refrain from disclosing them. I believe that such matters should not be spoken of at all” (Ibn Abī Uṣaybyʿa, n.d., p. 45). The principle that healthcare providers are committed to respecting the privacy of their patients was also reiterated in modern Islamic codes of medical and health ethics, as seen in the bioethical discussions facilitated by transnational authoritative institutions like the Islamic Organization for Medical Sciences (IOMS) (Jundī & ʿAwaḍī, 2005, pp. 366–368; Madhkūr et al., 1995, pp. 21–202, 753–755) and the International Islamic Fiqh Academy (IIFA, 2020, pp. 250–252). Both early and modern discussions endorse a broad scope of medical confidentiality, encompassing all information healthcare providers learn about their patients in their professional capacity, including details about patients’ sexual relations. Any deviation from this moral obligation should only be made by way of exception, subject to a rigorous assessment of anticipated benefits and potential harms. Importantly, it was emphasized that the list of permitted exceptions should be clearly defined in the regulatory frameworks or codes governing the practice of medical professions, along with guidelines on how such information should be disclosed and to whom. Unjustified breaches of this moral obligation were classified as both religious disobedience, subject to accountability before God, and professional violations that would eventually erode public trust in the profession. Broadly speaking, similar positions regarding the principle of medical confidentiality are reflected in the codified laws of different Muslim-majority countries (IIFA, 2020, pp. 250–252; ʿInabī, 2017; Ḥājj, 2017, pp. 155–157; Madhkūr et al., 1995, pp. 753–755; Muṣliḥ, 2021; Quradāghī & Muḥammadī, 2008, pp. 113–118).
In terms of societal values and social norms, proponents of this position highlighted various concerns. They argued that allowing the disclosure of nonpaternity IFs to the assumed father could destabilize the marital bond (rābiṭat al-zawjiyya) between the child’s mother and her husband, potentially leading to serious harm, and even the disintegration or complete destruction of an established family. Taking into account the prevailing cultural norms in diverse Muslim societies, revealing nonpaternity not only brings disgrace to the woman, even potentially jeopardizing her life, but also carries the risk of stigmatizing all her children. This could negatively impact their chances of marriage and establishing their own families in the future (Ḥājj, 2017, p. 164; Yāsīn, 2019, pp. 108–109).
Regarding the psychological impact on children, only a few studies have explored this aspect among groups of European ancestral descent. Despite some positive aspects reported by some, such as relief, comfort, and self-assuredness, available results overwhelmingly show negative influences on individuals’ overall well-being and identity formation. These negative effects include feelings of sadness, grief, loss, betrayal, anger, and existential concerns (Shepard et al., 2022). Currently, there is a lack of empirical data to make well-informed estimations about the possible impact of sharing the news of nonpaternity IFs with children in Muslim communities. However, beyond the question of genetic or non-genetic paternity, it is evident that knowing that one’s assumed parent is not one’s actual parent would adversely influence the child’s overall well-being.
Another moral concern is that the nonpaternity IFs almost inevitably leads to moral condemnation for the child’s mother because she was impregnated by someone other than her husband; an act which is both moral violation towards her husband and religious sin towards God. In response, it should be clear that both early and contemporary Muslim jurists did not see necessary relation between woman’s pregnancy, even if unmarried, and her having an adulterous relation. Muslim jurists envisaged different scenarios that would make such a woman innocent, such as rape, sleep sex or sexsomnia, erroneous sexual relationship (waṭʾ al-shubha), where one would mistakenly think that he/she is having intimacy with one's spouse, etc. (Group of Scholars, 1983–2006, vol. 24, pp. 25–32). It is very unlikely that the nonpaternity IFs would be sufficient to be sure that none of these innocent scenarios would apply to the woman in question and that she has engaged in an adulterous relation. Even if the worst-case scenario of an adulterous relation was the case, the ethical value of satr (literally “covering”), which means the concealment of people’s moral failures and sins would be in place.
Numerous Prophetic traditions recorded in canonical collections recommend that Muslims conceal not only their own faults and sins but also their brethren’s. Through this behavior, one becomes entitled to fitting rewards from God, like concealing one’s own transgressions on the Resurrection Day. As commentaries on these Prophetic traditions, Islamic literature on religious etiquettes (ādāb Sharʿiyya), Sufism and other disciplines provided insights on this value, explaining how to respect the privacy of individuals without sacrificing the value of collaboration to build a morally committed society. The main idea with relevance to the current discussion is that the value of satr should prevail as long as the person in question does not insist on challenging dominant social norms in public, and their moral transgression have not reached the judiciary authorities (Bayhaqī, 2003, vol. 9, 12, p. 39, pp. 154–171; Bukhārī, 1989, p. 266; Ghazālī, n.d., vol. 2, pp. 177–179, 199–201; Ibn al-Jarrāḥ, 1984, pp. 768–775; Ibn Ḥajar, 1959, vol. 5, pp. 97–98; Ibn Mufliḥ, n.d., vol. 1, pp. 234–235; Kharāʾiṭī, 1986, pp. 97–103; Nawawī, 1972, vol. 16, p. 135; Qushayrī, 2013, p. 10). Some scholars held that the value of satr would particularly apply to the case of adultery (Nasāʾī, 2001, vol. 6, p. 461; Qarāfī, n.d., vol. 3, p. 203). In the same vein, some Shāfiʿī and Ḥanafī jurists confirmed the position of al-Ghazālī (d. 1111), arguing that if an individual is questioned by a ruler about a grave sin (e.g., adultery or drinking alcohol) committed in secret by themselves or someone else, it will not be morally wrong in this context to deny that this sin was committed (Dimyāṭī, 1997, vol. 3, p. 288; Ghazālī n.d., vol. 3, p. 138; Haytamī, 1987; vol. 2, p. 326; Ibn ʿĀbidīn, 1992, vol. 6, p. 427).
In light of the above-outlined reasoning, revealing nonpaternity IFs to the assumed father is incompatible with the broad religio-ethical framework governing lineage or filiation (nasab) in Islamic jurisprudence and legal theory. Moreover, such disclosure would constitute a violation of religio-ethical and professional principles related to medical confidentiality. This disclosure lacks a foundation in a meticulous harm-benefit analysis that considers not only the assumed father but also the broader network of stakeholders involved, encompassing the child, the mother, and the family institution. Additionally, by disclosing IFs related to individuals’ moral lapses, one would transgress significant Islamic values, such as satr, which entails respecting people’s private lives, sometimes extending to concealing their moral transgressions and sins. In light of these considerations, we argue that both genetic/genomic research and clinical tests should adopt a targeted approach to minimize, if not avoid, encountering this type of sensitive IFs. Doing so would mitigate potentially stressful situations for researchers and clinicians.
B-2 Obligatory Disclosure
In contrast to the previously stated “Prohibited Disclosure” position, this standpoint asserts that the disclosure of nonpaternity Incidental Findings (IFs) to the assumed father is obligatory (wājib). This perspective, explored in-depth in a recently published book by Dr. Ayman Ṣāliḥ, delves into broader discussions on the interplay of DNA paternity and lineage (nasab). His perspectives on these broader issues align with an increasing number of Muslim jurists who defend the religio-moral significance of genetics in matters related to paternity. Dr. Ṣāliḥ, a specialist in comparative fiqh and legal theory (uṣūl) affiliated with the College of Sharia and Islamic Studies at Qatar University, stands alone among Muslim religious scholars in defending this position, as of the writing of this study in the summer of 2023. This uniqueness is underscored by the subtitle of his book, ‘New Juristic Insights (Naẓarāt Fiqhiyya Jadīda)’ (Ṣāliḥ, 2020). Given the singularity of his perspective on the disclosure of nonpaternity IFs, it is imperative to include it in this study. The book, published in Arabic, a language not accessible to many bioethicists worldwide, presents a position advocated by a specialist in Islamic jurisprudence and legal theory. Due to Ṣāliḥ’s well-constructed argumentation, aligned with a growing trend among contemporary Muslim jurists that places increasing emphasis on DNA paternity, it is likely to elicit diverse responses from other jurists and bioethicists in the future. The main arguments advanced by Ṣāliḥ to defend this position will be presented below under the heading “Main Arguments”. Thereafter, some brief comments and observations on his perspective will be outlined under the heading “Critical Remarks”.
B-2.1 Main Arguments
Before delving into the detailed arguments provided by Ṣāliḥ, a preliminary note is warranted on the foundational ideas upon which he has constructed the entire framework of his reasoning. Throughout the book, he emphasizes the revolutionary nature of DNA fingerprinting, not only as a modern technology unknown to early Muslim jurists but, more importantly, as a tool that jurists can employ to reconsider a substantial number of juristic rulings related to the concept of lineage (nasab). From the outset of the book, Ṣāliḥ contends that the discovery of DNA fingerprinting is one of God’s greatest gifts to humanity and should be regarded as a “revolution,” not only in scientific domains but also in the fields of jurisprudence and law. If used properly, Ṣāliḥ argues, DNA fingerprinting can significantly contribute to achieving one of the most crucial benefits for humans—safeguarding the lines of their lineage with an unprecedented degree of certainty that reaches almost 100%. In Ṣāliḥ’s perspective, this makes DNA fingerprinting a stronger proof for paternity and blood kinship than any other tool known to Islam and previous religions, including wedlock (firāsh) (Ṣāliḥ, 2020, pp. 5–6).
Within this conceptualization of DNA fingerprinting, the distinction upheld by the proponents of the “Prohibited Disclosure” position between religiously recognized lineage (nasab sharʿī) and biological relatedness (nasab bayuwlūjī) appears hardly relevant. According to this conceptualization, such a distinction would only hold merit in the era preceding the discovery of DNA fingerprinting, which now should stand as the prima facie basis for religiously recognized lineage as well. Furthermore, Ṣāliḥ asserts that biological relatedness, for which early jurists employed terms like baʿḍiyya or juzʾiyya (literally part-ness or portion-ness), has consistently been the genuine basis for religiously recognized lineage (nasab). Early jurists would only resort to alternative tools and proofs when conclusive means, such as DNA fingerprinting, were unavailable for examining this biological relatedness (Ṣāliḥ, 2020, pp. 28–63).
Against the above-sketched backdrop, Ṣāliḥ put forth four main arguments to defend his “Obligatory Disclosure” position. Within each argument, he provided very detailed reasoning, including possible critiques to his argument and his response to these critiques. Below, we will provide a condensed overview of these four arguments.
The first argument, which stands as the most detailed one, is premised on the moral principle of “forbidding wrong (al-nahy ʿan al-munkar)”, which has been widely discussed by Muslim scholars throughout Islamic history, as part of their commentaries on relevant scriptural references. In simple terms, this principle dictates that one should restrain people from doing wrong, evil or immoral acts (munkar) through available means and under specific conditions and etiquettes (Cook, 2001, 2003). Building upon the above-explained foundational idea that biological/genetic relatedness is the genuine lineage (nasab) recognized by Islam, Ṣāliḥ speaks about the evil of having a child misattributed to the woman’s husband although he is not the biological father. As this information is exclusively accessible to the researchers or the clinicians who came to know about the nonpaternity IF, no one else but them will be under religious obligation to take the responsibility of “denouncing the evil (inkār al-munkar)” and “speaking the truth (al-bawḥ bi al-ḥaqq) (Ṣāliḥ, 2020, pp. 257–258). By disclosing the nonpaternity IFs, the respective researchers or clinicians will also aid in encountering other forms of munkar, e.g., fooling the woman’s husband and preventing the adulterous woman from continuing the crime of falsely attributing a child to her husband and unlawfully benefiting, along with her child, from seizing her husband’s property, inheritance, and more (Ṣāliḥ, 2020, pp. 259, 273).
The other three arguments are premised on scriptural references, especially Prophetic traditions, whose overall purport stresses the obligation of providing information that would help others avoid serious harm or gain benefit. In the second argument, Ṣāliḥ focused on the thesis that bearing testimony (adāʾ al-shahāda), in the capacity of a witness, even if unsolicited, is obligatory. To defend this thesis, he quoted the commentaries of Muslim religious scholars on some Prophetic traditions pertinent to the concept of (unsolicited) testimony. Based on this premise, Ṣāliḥ reached the conclusion that the clinician is under obligation to disclose the nonpaternity IFs. The minimum obligation, according to Ṣāliḥ, is to disclose this information to the “one whose gene/genome has been screened, i.e., the examinee (al-mafḥūṣ)”, presumably the assumed father, and to show willingness to testify before the judge, if required. However, informing judiciary authorities directly about the nonpaternity IFs cannot be strictly judged as obligation because there is disagreement among Muslims jurists on this issue (Ṣāliḥ, 2020, pp. 278–279).
The third argument follows the same lines of reasoning but through the lens of providing advice (naṣīḥa) that would help others gain benefits or avoid harms. In the case of nonpaternity IFs, Ṣāliḥ explained that informing the assumed father would help him safeguard his religion, property, and honor. According to Ṣāliḥ, “no one would like to be fooled by adopting a child whom he thinks is his own, spending on him, and leaving him an inheritance, while he is not actually his own child, but rather the child of another man who is his enemy, who trespasses on his sanctity and honor”, in reference to the supposed wife’s adulterous relation (Ṣāliḥ, 2020, pp. 280–281).
The fourth argument revolves around a historical incident that took place during the lifetime of the Prophet of Islam, where a wet nurse claimed that she breastfed an already married couple. If proved true, the wet nurse’s unsolicited testimony would mean that the married couple were related to each other through milk kinship; a type of kinship that bars marriage in Islam. Although the husband insisted that the wet nurse must be lying, it was reported that the Prophet of Islam instructed the husband to leave his wife. Ṣāliḥ drew an analogy between the wet nurse’s unsolicited testimony and the clinician’s disclosure of the nonpaternity IF. In both cases, revealing such previously unknown information is religiously justified although it may eventually result in the disintegration of an established family. This is because, Ṣāliḥ explained, honoring the Lawgiver’s rulings should take precedence over the interest of maintaining family stability (Ṣāliḥ, 2020, pp. 281–282).
B-2.2 Critical Remarks
Throughout his book, Ṣāliḥ showed profound knowledge of the authoritative sources in the disciplines of fiqh and uṣūl. He also provided critical analyses and significant insights on how the modern technology of DNA fingerprinting can be integrated into related sets of juristic rulings. By valuing the semi-conclusive evidence of this technology to confirm or negate biological/genetic paternity, Ṣāliḥ rightfully criticized the rigidity (jumūd) of the contemporaneous jurists who insisted on ignoring this technology, while accepting much less scientifically proven tools, such as classical physiognomics (qiyāfa), simply because the latter was documented in the works of early jurists (Ṣāliḥ, 2020, pp. 9–11, 167, 291). As for his position on the nonpaternity IFs, especially when it comes to his thesis that disclosing these IFs to the assumed father is a religious obligation, three broad remarks will be outlined to engage with the problematic aspects of Ṣāliḥ’s thesis.
The first remark has to do with the concept of geneticization; a term whose coinage dates back to the 1990s and since then has been used by different researchers to express concerns about the essentializing effects of genetics and its technologies on different aspects of life, including fundamental concepts in our life like paternity and genealogy (Arribas-Ayllon, 2016; Marks, 2002; Nash, 2004). Ṣāliḥ’s overall framing of DNA paternity, as explained above, reflects a strong inclination towards the geneticization of lineage (nasab). The fascination with the novelty of DNA paternity, its semi-conclusive evidence, and its potential to resolve many classical controversies in fiqh, led Ṣāliḥ and likeminded contemporary jurists to lean towards reducing nasab to the biological contribution of man’s sperm and woman’s egg (Ṣāliḥ, 2020, pp. 18–21, 28–63, 246). Besides the concerns raised by secular ethicists about the geneticization of complex and central concepts in shaping people’s moral worlds like kinship and family (Copeland, 2020; Marks, 2002), we briefly highlight two possible critiques from within the Islamic tradition.
One critique is related to the consensually recognized non-genetic form of kinship, namely milk-kinship. By breastfeeding a child who is two-years or younger, under specific conditions, the breastfeeding woman becomes the nursling’s surrogate mother, and her husband becomes the surrogate father. This type of nasab also prohibits marriage among “milk-relatives” in the same way that genetic/blood relationships do not permit marriage between such relatives (Giladi, 1999, pp. 68–114). Strikingly enough, Ṣāliḥ sees the concept of milk kinship as supportive evidence for his perspective, rather than a challenge to it. According to him, an analogy can be drawn between genetic kinship and milk kinship because early Muslim jurists held that both types are premised on the abovementioned concept of baʿḍiyya, literally part-ness or portion-ness. In the case of milk kinship, the wet nurse’s milk provides nutrition for the nursling and in the case of genetic kinship, the woman provides the egg (Ṣāliḥ, 2020, p. 47). However, this comparison is open to another, possibly more reasonable, reading holding that the classical term of baʿḍiyya cannot be reduced to the modern concept of genetic kinship. According to early jurists, a woman’s contribution to the makeup of a child, whether by providing an egg that carries genetic components or breastfeeding milk that does not, is acknowledged as a “baʿḍ (part)” that serves as the foundation for a religiously-recognized kinship. This perspective, which does not differentiate between the genetic and non-genetic component (baʿḍ), contradicts the geneticization thesis.
Another critique for the geneticization of nasab lies in the overwhelmingly “innocent” approach to genetics, considering it a neutral tool that would help contemporary Muslim jurists resolve all the complex dilemmas that their predecessors could not. However, genetics does not only provide information about how humans are biogenetically related to each other, but it can also re-shape or even manipulate the genetic components that create kinship. So, while it may resolve previous dilemmas, genetics also introduces new ones in which establishing paternity will no longer be straightforward, even within the geneticized approach. For instance, the female genetic contribution that entitles a woman to motherhood, as per the geneticized approach, can be fragmented through technologies like mitochondrial transfer, involving genetic material from more than one woman. Possible (future) applications of advanced technologies, like human genome editing, may be able to do the same with male genetic contribution. Some advancements may also make human reproduction possible without the direct contribution of female egg and male sperm (Craven et al., 2018; Serour, 2022).
In his book, Ṣāliḥ did not pay attention to such complications and challenges and how they would affect his perspective on paternity. In a section entitled “Modern Reproductive Means (wasāil al-injāb al-mustajadda)”, he only discussed in vitro fertilization (IVF), surrogacy and cloning. Regarding cloning, he found it challenging for his perspective of the geneticized nasab, saying that he is still unsure about how to determine the paternity of the cloned child. One option he considered was that the man who provided the DNA can be considered the child’s father, with no genetic mother because no woman provided an egg. The surrogate mother would then be considered a foster- or milk-mother. Alternatively, he suggested considering the DNA donor as the cloned child’s twin brother, because they both originated from the gametes of the genetic parents of the DNA donor. While admitting uncertainty in choosing between these options, he speculated that perhaps divine intervention would prevent successful human cloning, sparing men from the need to resolve this dilemma (Ṣāliḥ, 2020, p. 248).
In all cases, with such a geneticized approach the thick and multi-layered religio-ethical concept of nasab, intricately tied to the institution of marriage and related notions like wedlock (firāsh), would hardly play any role in the juristic reasoning about paternity. At the very least, one can safely say that this way of geneticizing nasab and disconnecting it from marriage does not align with the prevailing position adopted by the majority of individual Muslim jurists and transnational Islamic institutions, which discuss bioethical issues by engaging both religious scholars and biomedical scientists (IIFA, 2020, pp. 661–662; Jundī and ʿAwaḍī, 2005, pp. 461–465; Kaʿbī, 2006, pp. 369–381; Quradāghī & Muḥammadī, 2008, pp. 337–369; Ṣāliḥ, 2020, pp. 17–18). Therefore, building upon this geneticized framing of paternity to argue that it is a religious obligation to disclose nonpaternity IFs is, at best, problematic and does not align with the prevailing perspective of how the majority of Muslim jurists conceptualize the relationship between genetics and lineage.
An additional critical remark can be framed within the context of “fiqh-abstracted-from-ethics” approach, which permeates Ṣāliḥ’s book and dominates his reasoning for the “Obligatory Disclosure” position. He adopted a predominantly legalistic approach, with a clear focus on the technical aspects of construing a juristic ruling (ḥukm fiqhī). In Ṣāliḥ’s reasoning, the ruling on its own should guide one’s behavior even if its consequences may give rise to certain ethical concerns. For instance, in asserting that the disclosure of nonpaternity IFs to the assumed father is a religious obligation, Ṣāliḥ posits that the primary benefit is to prevent mixing lineage (khalṭ al-nasab) so that children will not be misattributed to mistakenly assumed fathers. Consequently, he contends that the moral risks associated with destabilizing family, violating the woman’s privacy and causing her disgrace do not outweigh the religious obligation of disclosing the nonpaternity IFs to the assumed father. Regarding the aforementioned value of satr or the concealment of people’s moral failures and sins, Ṣāliḥ holds that honoring this value does not apply to the case under discussion. Remaining silent about a woman’s moral transgression of adultery, he explained, would result in neglecting the rights of her husband, e.g., knowing that he was betrayed and that an unrelated child has been falsely attributed to him (Ṣāliḥ, 2020, p. 264, p. 265).
Such an excessively legalistic approach, which does not afford due consideration to significant values like satr, does not accurately reflect the tolerant and nuanced positions adopted by many early Muslim jurists. The perspective expressed by the prominent Mālikī jurist al-Qarāfī (d. 1285), frequently cited by Ṣāliḥ, will serve as an illustrative example in this respect. Al-Qarāfī discussed the maximum duration of pregnancy, during which the child would be attributed to the woman’s husband, assuming that she was impregnated by him. Classical medical knowledge available to jurists suggested that, in exceptional cases, pregnancy could extend for years. In response, Muslim jurists, including al-Qarāfī, accepted the possibility of an extended pregnancy, up to two years or even more according to some opinions.Footnote 18 The question arises: Why would jurists accept the idea of such an extended pregnancy although its likelihood is much lower than that of a woman’s adultery? In response, al-Qarāfī provided a profound ethical explanation. He explained that preference was given to the low probability of the rare case (i.e., extended pregnancy within marriage) than to the high probability of the common case (pregnancy resulting from a woman’s adulterous relationship) because of ethical considerations. These considerations include God’s kindness (luṭf) towards His servants, concealment (satr) of their defects, and the establishment of barriers preventing adultery from being legally proven. Unlike other offences, al-Qarāfī concluded, we have been commanded to exert the utmost effort in concealing the identity of the adulterous persons, not to bear unsolicited testimony related to adultery, and to decline bearing such testimony if we are solicited to (Qarāfī, n.d., vol. 3, p. 203).
Al-Qarāfī’s aforementioned reasoning is pertinent to the nonpaternity IFs because a woman’s adultery in this context also remains a matter of likelihood. The conclusive evidence of DNA paternity only relates to determining the genetic relatedness between the child and the woman’s husband. On multiple occasions, Ṣāliḥ himself conceded this fact and introduced possible scenarios, where a woman could be impregnated by someone other than her husband without engaging in adulterous relation, such as cases of rape or sexual intercourse while intoxicated or unconscious (Ṣāliḥ, 2020, p. 171, 261, 266, 279). However, Ṣāliḥ’s argumentation for the “Obligatory-Disclosure” position is replete with references to a woman’s adulterous relations that result in a child genetically unrelated to her husband (Ṣāliḥ, 2020, pp. 257–282). In some instances, he also alluded to the argument that the woman should have been aware that her husband is not the biological father of her child and, thus, she has deliberately hidden this fact from her husband (Ṣāliḥ, 2020, p. 272).
The third critical remark builds upon the second, which showed the marginal attention paid to related ethical aspects in Ṣāliḥ’s reasoning. In fact, this remark relates more to researchers interested in Islamic bioethics than to Ṣāliḥ’s specific work. Many works authored by specialists in fiqh and uṣūl tend to approach bioethical questions through the exclusive lens of their own specialization. This approach should be named “medical jurisprudence (al-fiqh al-ṭibbī)” to differentiate it from the bioethical discourse, which should have a strong interdisciplinary character. Thus, bioethics researchers should be aware that consulting these works, although indispensable for Islamic bioethical reasoning, cannot be the sole type of sources and that other relevant disciplines should also be involved. An increasing number of publications have already been examining the broader question of how fiqh and bioethics should relate to each other, arguing that the fiqhī approach alone is insufficient to address the complexity of many bioethical issues (Ghaly, 2022, p. 13; Khaṭīb, 2019; Sachedina, 2008a, pp. 25–31, 2009, pp. 3–23; Sartell & Padela, 2015, p. 756).
However, as discussed in the previous section on the “Prohibited Disclosure” position, this stance poses significant challenges from a medical ethics perspective. It conflicts with the professional obligation to adhere to the principle of confidentiality. According to this principle, healthcare professionals are ethically bound to respect their patients' privacy, unless exceptional circumstances dictate otherwise. Within this medical ethical framework, the circumstances where patients' confidential information can be disclosed are much more restricted compared to Ṣāliḥ’s approach. As elucidated earlier, the former framework is endorsed by both Islamic codes of medical ethics and codified laws in many Muslim-majority countries.
Upon examining the list of references in Ṣāliḥ’s book, the predominance of the fiqhī approach is evident. Even when examining issues with direct relevance to the field of ethics, like the value of satr, he continued consulting juristic sources exclusively. Works that addressed these issues through the lens of ethical or religious etiquettes (ādāb Sharʿiyya) were not consulted (Kharāʾiṭī, 1986, pp. 97–103; Ibn Mufliḥ, n.d., vol. 1, pp. 234–235). Additionally, what is missing in Ṣāliḥ’s reasoning is engagement with the field of healthcare and medical professional ethics. In his first argument explained above, related to “denouncing wrong”, Ṣāliḥ stressed that the medical specialist who discovered the non-paternity IFs is as religiously responsible (mukallaf) as other stakeholders, including the woman and her husband. Therefore, the specialist, upon learning of something wrong or evil (munkar), such as misattributed paternity or adultery, is under a religious obligation to denounce it and to speak the truth. In other words, the clinician’s primary religious commitment mandates adopting a proactive stance by denouncing patient’s evils unless there are exceptional circumstances to judge otherwise. However, as explained in the previous section on the “Prohibited Disclosure” position, this stance poses significant challenges from the medical ethics perspective. It clashes with the professional obligation to adhere to the principle of confidentiality. According to this principle, the ethical commitment of healthcare professionals will be conversed, compared to Ṣāliḥ’s approach. Within this medical ethical framework, healthcare professionals are under obligation to respect their patients’ privacy unless exceptional circumstances dictate otherwise. Therefore, the list of cases where patients’ confidential information can be revealed will be much shorter than within Ṣāliḥ’s framework. As explained in the previous section, the former framework is endorsed by both Islamic codes of medical ethics and codified laws in many Muslim-majority countries.
Ṣāliḥ acknowledges that existing codified laws generally prohibit the disclosure of nonpaternity IF. While he holds that such laws are incompatible with Sharia, he suggests that the clinician would be exempted from the religious obligation to disclose nonpaternity IF, if these laws would impose disciplinary measures such as heavy fines, imprisonment, or dismissal from work. Another acceptable exception for Ṣāliḥ is when the clinician fears that disclosing these IFs would lead to the woman being killed or severely harmed by her husband or her own family, with no one to protect her. If this was the case, he explained, disclosing these IFs would be prohibited because the evil of unlawful murder outweighs that of misattributed paternity (Ṣāliḥ, 2020, p. 260). An M.A. thesis supervised by Ṣāliḥ and defended at Qatar University in 2017, confirmed these concerns about woman’s safety, speaking about conservative societies that still harshly deal with such sensitive issues, although the severity of this reaction may have decreased by time (Ḥājj, 2017, p. 164). With these two barriers in place, namely existing laws that do not permit the disclosure of nonpaternity IFs and the potential risks to the woman’s life or safety if they are disclosed, Ṣāliḥ’s “Obligatory Disclosure” position, in his own perspective, remains unapplicable for the time being. If these two barriers were ever lifted, several unanswered questions would still need consideration to enhance the consistency and coherence of this position. For instance, would the disclosure of the nonpaternity IFs entitle the assumed father to claim reimbursement for the financial and emotional cost of raising an unrelated child, as well as for the psychological harm resulting from paternity fraud, etc.?Footnote 19 Besides the nonpaternity IFs, which other evils or wrong acts (munkarāt) would healthcare professionals be under obligation to disclose, to whom, and under what conditions?
(C) Recommended
The key features of the IFs whose disclosure would fall within the category of “recommended” acts can be outlined at the hand of the following thesis: Unless it was agreed otherwise, it is recommended to share information with adult and religiously accountable (mukallaf) individuals whose genes/genomes were sequenced about the IFs that help them prevent or treat diseases or improve one’s overall health. The main lines of reasoning in defense of this thesis and related cases will be detailed under two sub-headings, namely “Theoretical framing: Seeking medical treatment (tadāwī) and providing medical care (taṭbīb)” and “Applied Example: ACMG List”.
C-1 Theoretical Framing: Seeking Medical Treatment (tadāwī) and Providing Medical Care (taṭbīb)
Beyond the above-explained lifesaving situations, the dominant majority of both early and contemporary jurists opine that seeking medical treatment (tadāwī) is in principle permissible (Group of Scholars, 1983–2006, vol. 11, pp. 115–124; Ibn Mufliḥ, n.d., vol. 2, p. 349; IIFA, 2020, pp. 210–213; Quradāghī & Muḥammadī, 2008, pp. 187–202). Additionally, many early and contemporary Muslim jurists hold that the act of medical treatment (tadāwī) will be recommended when the expected medical benefit would fall within the scope of “overwhelming probability (ghalabat al-ẓann)” (Ḥārithī, 2009, pp. 334–336; Ghazālī, n.d., vol. 4, p. 265, 283; Nawawī, 1972, vol. 14, p. 191). This concept represents a middle ground between the category of doubt (shakk) and that of certainty (yaqīn) (Abū Yaʿlā, 1990, vol. 1, p. 135; Fāʿūrī, 2019, pp. 217–218; IIFA, 2022, p. 211; Jaṣṣāṣ, 1994, vol. 1, 2, p. 214, 320; Samʿānī, 1999, vol. 1, p. 23). The juristic ruling pertains here to the patient, enabling them to make autonomous decisions about their body and health conditions, as elucidated in the previous section on “Obligatory”.
Another crucial concept, which is particularly relevant to the act of disclosing IFs, is the provision of medical care (taṭbīb). Unfortunately, various authors have not consistently captured the morally relevant nuances between the two terms of tadāwī and taṭbīb, often using them interchangeably, or employing the latter term to mean learning the profession of medicine itself. In this context, many argued that learning the medical profession is a collective obligation (farḍ kifāya) (e.g., Quradāghī & Muḥammadī, 2008, pp. 103–104). For those who interpret the term taṭbīb as the routine practice of medicine, it is deemed fundamentally permissible. However, it is elevated to the rank of recommended acts, if the practicing physician intends to emulate the Prophetic role model by being beneficial to other Muslims, as instructed in the Prophetic tradition “Whoever among you is in a position to benefit his brother, he should do so.” Taṭbīb becomes obligatory, scholars explain, when the practicing physician is the sole individual capable of assisting the patient, such as in certain emergency cases, or when committed by the force of a contractual obligation (Group of Scholars, 1983–2006, pp. 12–135).
Disclosing the IFs that would fall within the scope of the above-sketched thesis, with the aim of enabling individuals to take good care of their health, is a beneficial act whose nobility is particularly valued because the prospective beneficiary did not ask for and did not know about them. Whether the receiver of these IFs eventually decides to use them or not, disclosing the IFs remains a praiseworthy act in itself. As disclosing the IFs does not automatically involve an intervention in the patient’s body, the absence of consent beforehand should not impede classifying this act as recommended. The possible harm that the patient may feel distressed or concerned about one’s health condition is overruled by the expected benefit. As articulated in the thesis above, shared information should be “actionable”, in the sense that the patient will be able to use this information to improve his/her health. That is why the disclosure of these IFs should be part of a broader package of actions, including not only the availability of clinical follow-up but also religio-culturally sensitive genetic counseling services. On the other hand, the basic ruling of judging the disclosure of these IFs as “recommended” would move to the category of “reprehensible” or even “prohibited” if specific contextual factors change. For instance, if the respective individual expressly asserts their “right not to know” during informed consent process, expressing their unwillingness to receive this type of IFs. Conversely, if the research or healthcare institution or the authorized national governmental body mandate the disclosure of IFs related to specific diseases, affiliated healthcare professionals should abide by these professional regulations.
C-2 Applied Example: ACMG List
The chosen applied example of the IFs whose disclosure fits within this category is the widely accepted “minimum gene list” developed by the American College of Medical Genetics (ACMG), below the ACMG list or minimum list. Initial efforts to develop this list date back to 2011 when the ACMG established a “Working Group on Incidental Findings in Clinical Exome and Genome Sequencing (below, Working Group)” and assigned its members the task of making recommendations on the responsible management of IFs when patients undergo exome or genome sequencing (Green et al., 2013, pp. 565–566). Since then, ACMG has been updating, revising and refining this list, with the help of “Secondary Findings Maintenance Working Group (SFWG)” that the ACMG created in 2014. The current ACMG practice involves annual updates to the gene list, published every January, and a general policy statement every 3–4 years (Kalia et al., 2017; Miller et al., 2021, 2021a, 2022). We argue that disclosing the IFs included in the ACMG list falls in principle within the category of recommended acts. The rationale of this position is premised on two main aspects.
The first aspect has to do with the meticulous way through which the ACMG list is compiled, the follow-up processes of verification and revision, and the serious health risk that can be prevented or significantly reduced. The members of the Working Group were appointed and approved by the ACMG Board. Different drafts of their proposed principles and plans underwent extensive reviews and revisions at multiple stages, involving different experts. This included evaluation during the ACMG Annual Meeting, feedback from ACMG members, review by the ACMG Board, a subsequent review by fifteen external reviewers, and then final approval by the ACMG Board. Additionally, members of the aforementioned SFWG have diverse and interdisciplinary specializations, including biochemical, molecular, and/or cytogenetics clinical laboratory directors, clinical geneticists of differing subspecialities, genetic counselors, cardiologists, medical geneticists, pharmacogenomics experts, patient advocates, bioinformaticians, bioethicists, and specialists in genetic disorders in diverse populations (Miller et al., 2021, p. 1382, 2022, pp. 1407–1408). Throughout these different processes, the minimum list is developed and further refined on the basis of consistent criteria, including the severity of the health threat and likelihood of it materializing, the efficacy of available interventions and their acceptability based on risks and benefits, and the overall knowledge base about the gene or condition. Regarding the health risk that can be prevented or reduced, most of the conditions on the ACMG list are associated with serious diseases, especially heart disease and cancer, which are among the leading causes of mortality (Miller et al., 2021; Wilfond et al., 2022, p. 87).
The other aspect relates to the potential medical benefit associated with the use of the ACMG list. Available data and analyses presented in the ACMG publications, along with findings from external academic research, demonstrate that the medical benefit expected from disclosing the IFs related to the minimum list remains within the realm of probability and likelihood. It is true that the ACMG is continuously refining its processes for developing and revising and updating the minimum list, especially responding to critical remarks pertaining to scientific and ethical aspects (e.g., Allyse & Michie, 2013; Burke et al., 2013; Hofmann, 2016; Holtzman, 2013; Korf, 2013; Townsend et al., 2013;). However, it is acknowledged that the list does not yield fixed results or conclusive findings, to the extent that genes can be, and some have already been, removed or added over time, depending on updated information and feedback from the scientific community. In this regard, it is also stressed that reporting IFs related to the ACMG list should be transparent about existing limitations so that the disclosure of IFs will not be misrepresented or misinterpreted as an exhaustive evaluation of all variations within the genes on this list (Green et al., 2013, p. 572).
Another challenge in developing and verifying the ACMG list is the potential bias in research, with some genes or variants being predominantly studied in European-dominant cohorts, thus lacking evidence from diverse patient populations. This raises concerns about the generalizability of findings to other ethnicities. Recent updates in the minimum list show that the SFWG has been paying attention to this challenge. The addition of the aforementioned TTR gene in the ACMG list of v. 3.1, although it was rejected in v. 3.0, is a good example in this regard. The most pathogenic variant in TTR worldwide has a particularly high frequency in individuals with West African ancestry and is a common cause of heart failure in persons of African descent. Through this shift, the SFWG wanted to avoid penalizing “genes associated with conditions that disproportionately affect 1 or more minoritized group if they are rare or have lower penetrance in the US population as a whole” (Miller et al. 2022, 1408). Geneticists working in the Muslim world, actively engaged in these discussions (e.g., Abouelhoda et al., 2016),Footnote 20 have confirmed the relevance of ACMG list and the likelihood of its medical benefit across all populations, including Muslim communities with non-European descent. The same position is also shared by the authors of different publications that have examined available whole genome and exome datasets from the Gulf region to identify medically actionable variants in the ACMG list (e.g. Elfatih et al., 2021, 2021a; Jain et al., 2018).
By aligning these two aspects of the ACMG list with the theorical discussions on the two concepts of tadāwī and taṭbīb, we conclude that the medical benefit accruing from disclosing the IFs of the minimum list fits within the scope of the above-mentioned “overwhelming probability (ghalabat al-ẓann)”. Thus, the disclosure of these IFs falls, in principle, within the category of “recommended” acts. As explained in the previous section, this basic ruling would change if morally significant characteristics of these IFs or the context of their disclosure differed.
As per the ACMG guidelines, the minimum list applies to the clinical setting (Green et al., 2013, p. 569; Miller et al., 2021a, p. 1393). This limitation in scope is in alignment with the scope of tadāwī and taṭbīb, as outlined in the previous section. Some of the differences between the clinical and research contexts do morally matter, such as the lack of patient-physician relationship between the researcher and participant and the lack of resources (financial, appropriate counseling skills, and time) for appropriate clinical follow-up in the research setting. Considering such differences, we argue, it will be unjustified to hold that it is equally recommended to disclose the IFs of the ACMG list in the research context.
As per our thesis above, what is recommended is the disclosure of these IFs. Besides that, the ACMG also recommends actively searching for them (Green et al., 2013, p. 567). We argue that the two acts (viz., disclosing the IFs and actively searching for them) cannot be judged as equally recommended. Active searching for a continuously increasing list of genes—currently 73 in total, as per the ACMG minimum list v. 3 (Miller et al., 2021, p. 1382)—would place extra, and sometimes even disproportional, burden on laboratories working in many Muslim countries to the extent that it may eventually divert them from their mandatory and primary tasks.
In addition to the straightforward option of responding to these different characteristics and contextual changes by classifying related acts within different categories, we can also draw upon the perspective held by various early and contemporary jurists, holding that the broad category of “recommended” can be further divided into sub-categories (Ghandal, 2020, pp. 193–195; Ibn al-Najjār, 1997, vol. 1, pp. 404–405; Ibn Daqīq al-ʿĪd, 2009, vol. 3, p. 38; Khamrī, 2015, pp. 211–221; Māzarī, n. d., p. 241; Raysūnī, 2022, pp. 123–127 l; ʿUmayrī, 2005, pp. 137–141). Thus, disclosing these IFs in a research context can be judged as “less recommended”, or classified in a lower sub-category, than the act of disclosing them in a clinical context that would be deemed as “more recommended”. The same distinction would also apply to the difference between disclosing and actively searching for these IFs.
(D) Reprehensible
The main characteristics of the IFs whose disclosure fall under the category of “reprehensible” acts can be outlined at the hand of the following statement: Unless it was regulated otherwise by the force of binding laws or professional regulations, it would be reprehensible to disclose IFs related to misattributed distant lineage, especially tribal filiation, to an adult and religiously accountable individual (mukallaf), whose genes/genomes were sequenced.
To articulate a reasoned argument for this thesis and its corresponding instances, details will be presented in two distinct sections, namely “Theoretical Framing: Distant Lineage” and “Applied Example: Genetic Ancestry.”
D-1 Theoretical Framing: Distant Lineage
In addition to the above-outlined significance of establishing paternity or “immediate lineage”, determining one’s distant lineage (nasab baʿīd), which stretches numerous generations back, also holds religio-cultural significance. Before the advent of Islam, Arabs regulated different aspects of their life, especially in the socio-political domain, based on the lines of tribe-based lineage. This lineage would largely determine not only one’s individual status but would also influence broader kinship and socio-political structures within society. Which tribe one belongs to and how tribes are related to each other were all essential factors in the determination of individual and collective realities, and ultimately organizing, periodizing and eventually shaping Arab history through an extensive family-tree framework. Within such framing of distant nasab, the degree of one’s nobility and aristocracy (ḥasab) was strongly tied to one’s genealogy, as individual status was contingent upon the noble deeds and exploits of ancestors (Khalidi, 1994, p. 5; Marlow, 2012; Ghazālī, 2021).
With the advent of Islam, the pre-Islamic significance of nasab and tribal pride got neither completely dismissed nor uncritically embraced. A distinction needs to be made between the cultural aspects of distant nasab and the empirical reality of Muslims on one hand, and related religious norms, on the other. These two dimensions sometimes ran parallel to each other, yet at other times, they diverged. The socio-cultural significance of nasab continued to play out in different aspects of life during the early history of Islam, notably during the Umayyad period (661–750). For instance, the state-administered payment of stipends (ʿaṭāʾ), the allocation of residential quarters and lands, and other administrative exigencies made the identification of individuals through genealogical registers necessary. These developments, in combination with other factors, led to heightened interest in genealogy, and different works were compiled to write down, systematize and preserve the repertoire of Arab genealogies (Duri, 2014, p. 50; Khalidi, 1994, p. 5, pp. 49–61).
The role played by tribal filiation or tribe-based nasab evolved across different historical periods. So, Arab tribal aristocracy lost much of its socio-political prestige and military influence during the early Abbasid period (750–861), due to different factors such as the expansion of the Islamic empire far beyond the Arabic peninsula, and the conversion of non-Arabs who assumed high-rank positions and made seminal contribution to Islamic scholarship. After various ups and downs, tribe-based nasab in the context of modern nation-state lost much of its socio-cultural significance in some Muslim-majority countries (Bakhsh, 2022). However, it has acquired new forms of significance in other countries, especially in the Gulf region. Besides its role in the formation of collective identity in these countries, tribal filiation determines one’s socio-political status, marriageability, and eligibility to political positions. Additionally, it entitles individuals and groups to numerous benefits offered by these oil-rich economies (Al-Farsi, 2013; Al-Sharekh & Freer, 2022; Möller, 2022; Samin, 2015; Tok et al., 2016).
Concerning religious normativity, an excessive pursuit of nasab and exaggerated tribal pride can be classified as antithetical to the purport of different references in the Islamic scriptures, where it was emphatically stated that religious piety is the source of one’s nobility and dignity in this life and salvation in the hereafter. In the context of this life, a Quranic verse clearly gives preference to religious piety, “O mankind! Surely, We created you from a male and a female, and made you into races and tribes so that you may know one another. In God’s eyes, surely the most noble of you is the most pious among you. Allah is truly All-Knowing, All-Aware.” (49:13). Regarding the hereafter, another Quranic verse underscores the dissolution of kinship ties on the Day of Resurrection, asserting “Then, when the Trumpet is blown, no ties of kinship (ansāb) between them exist on that Day, nor do they ask about one another” (23:10). This illustrates that all kinship ties and concerns related to them will vanish on the Day of Resurrection. Similar sentiments have been reiterated in different Prophetic traditions. Just as a representative example, the Prophet of Islam was asked “Who is the most noble among humans?” The Prophet replied by saying, “The most noble among them is the most pious” (Ibn Ḥajar, 1959, vol. 6, pp. 414–415).
Within such religiously informed framing, Islamic scholarship developed new forms of religion-based collective identities and “genealogies”, as reflected in some historical genres. For instance, biographical works, known by the term of ṭabaqāt or siyar, introduced religious nobility as embodied in the exploits of the Prophet of Islam and His Companions, in addition to prominent Muslim religious scholars and pious figures. These figures were bonded to each other through non-biological means, e.g., religious scholarship, school of thought, etc. (e.g., Aṣbahānī, 1974; Dhahabī, 2006; Ibn Saʿd, 1990; Shirāzī, 1970).
While Islamic normativity places religion-based collective identities above tribe-based genealogy, it does not render distant lineage culturally or religiously irrelevant. Available fatwas issued by contemporary jurists demonstrate notable interest among Muslim individuals and groups in questions about tribal filiation and distant lineage. The underlying reasons behind this seemingly growing interest are diverse. At times, it involves the social prestige associated with one’s filiation to a certain tribe, especially those whose genealogy stretches back to the family of the Prophet of Islam, known by the honorific title of Āl al-Bayt or al-Ashrāf. Such questions also touch upon the issue of marriageability and whether distant lineage would impact one’s competence (kafāʾa) and eligibility to marry someone from a more prestigious tribe (Ibn Bāz et al., 1994, vol. 3, pp. 162–166; Islamweb, 2009). This issue can sometimes be intensely sensitive and controversial to the extent that involved parties would seek judiciary verdicts (Samin 2012). In other instances, questioners express concerns about the misuse of tribal filiation for political gains or feeling shameful to be associated with what one judges as a notorious tribe (Dār al-Iftāʾ, 2012, 2019).
These different aspects underscore the enduring significance of distant lineage up to the modern time. Thus, contemporary Muslim jurists built upon the discussions of previous scholars on how distant lineage and tribal filiation should be regulated from an Islamic perspective. They reaffirmed the agreements of early Muslim jurists that it is categorically forbidden to fake or falsify one’s distant lineage or tribal filiation. According to some jurists, both distant and immediate lineage do equally matter in this respect. The often-quoted Prophetic tradition to support this position reads “A person who, knowingly, claims to be filiated with someone other than one’s real father commits an act of disbelief. And whoever claims filiation to a group (qawm) with whom he has no lineage, let him take his abode in Hell” (Ibn Ḥajar, 1959, vol. 6, p. 540).
Additionally, distant lineage or tribal filiation would be established and religiously recognized though one of the following means:
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Widespread knowledge (istifāḍa): When someone’s distant filiation to a specific tribe or extended family is “widely known”, it should be a sufficient ground to recognize that lineage. Muslim jurists, however, disagreed on the required minimum threshold through which istifāḍa can be established. Some held that the testimony of two upright witnesses should suffice, whereas others insisted on a more substantial number. The latter group stressed the confirmation should come from a significant group of people, ensuring that their collective affirmation reflects common knowledge within their community (Ibn Qudāma, 1968, vol. 10, p. 141; Shaddī, 2023, pp. 425–426).
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Acknowledgement (iqrār): When the chiefs of a certain tribe acknowledge the claim of filiation made by the leaders of another tribe, then lineage is to be established as long as this acknowledgement is not disputed by others and it does not contradict empirical reality, thus avoiding scenarios as a claim of lineage between an Arab and non-Arab tribe (Buhūtī, n.d., vol. 6, p. 461; Shaddī, 2023, p. 427; Zuḥaylī, n.d., vol. 8, pp. 6122–6127).
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Clientage (walāʾ) and alliance (ḥilf): The two institutions of clientage or mutual loyalty (walāʾ) and alliance (ḥilf) were prevalent forms of relationships in Islamic history, which connected different groups and tribes and created thereby a particular type of kinship. Established through a contractual bond of mutual rights and obligations, these institutions fostered not only social solidarity but also created unique type of non-biological or non-genetic filiation. Consequently, individuals involved in these relationships became subject to some lineage-based juristic rulings. Clientage was linked to the practice of slavery, which is considered antithetical to the Islamic value system by the overwhelming majority of contemporary Muslim scholars. However, both early clientage and tribal alliance-based connections are still recognized by contemporary Muslim jurists, as long as they do not negate, replace or overrule biological kinship (Islam QA, 2019; Shaddī, 2023, pp. 436–437).
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Documented proof (bayyina): Contemporary Muslim jurists and fatwa institutions held that documents, such as historical sources or family trees, when endorsed by trustworthy genealogists or judiciary authorities, can serve as a valid basis for establishing one’s distant lineage (Shaddī, 2023, p. 426).
With the advent of advanced genetic and genomic technologies (e.g., genealogical DNA tests), questions were raised about the religious permissibility of utilizing these technologies to establish or negate distant lineage. In response, many fatwas held that these technologies should not be used for these purposes. The main argument used to defend this position is that these techniques do not furnish conclusive evidence about one’s distant lineage. It is noteworthy that this argument has influenced some of the advocates of geneticized paternity, including the abovementioned Dr. Ayman Ṣāliḥ, who acknowledged the lack of definitiveness in the results produced by genealogical DNA tests (Ṣāliḥ, 2020, p. 135). If the International Islamic Fiqh Academy (IIFA) held that DNA paternity test whose results are (semi-)conclusive cannot be used for examining paternity, so goes the reasoning, then other technologies with much less reliable results should not be employed in cases related to distant lineage. Beyond these scientific considerations, blocking the means to potential misuse of these technologies concerning distant lineage and preferring the slippery slope logic (sadd al-dharāʾiʿ) has also to do with broad socio-political concerns, e.g., the risk of generating discord and social unrest, casting doubts on long-established relationships and kinships that shape societal fabric, and eventually contributing to societal disintegration (Islamweb, 2009; Shaddī, 2023, p. 442). In addition to these non-binding religio-ethical perspectives, some countries such as Saudi Arabia have adopted stringent measures integrated into the binding legal and judiciary systems for those who want to employ any of the above genetic or non-genetic technologies to make changes in an existing distant lineage. According to these procedures, claims regarding tribal filiation shall not be entertained in the judiciary system without prior royal approval (Shaddī, 2023, pp. 442–446, 451–453).
D-2 Applied Example: Genetic Ancestry
Genetics and genomics have ushered in remarkable advances and technological tools, such as genetic ancestry tests (GAT), genealogical DNA tests, facilitating the identification of one’s distant lineage and genealogical relationships. The increasing availability and affordability of these tools, coupled with skyrocketing public interest, have fueled the rapid expansion of genetic ancestry, also known as genetic genealogy. In simple terms, GAT and analogous tests typically scrutinize specific regions of an individual’s DNA to identify genetic markers shared with other individuals, groups, specific ethnicities or populations (Bolnick et al., 2007; Jorde & Bamshad, 2020; Mauro et al., 2022).
Genetic ancestry and related tests can in principle be used for a wide range of purposes, blurring the lines between what is sometimes labelled as “recreational”, “forensic” and “clinical” genetics, while introducing and revisiting concepts like “biological” or “genetic citizenship”. So, these tests can be used to satisfy one’s curiosity by uncovering their ancestral roots and connecting with long-lost relatives. However, databases developed for this “recreational” purpose are also leveraged by the emerging forensic genetic genealogy (FGG) to identify suspects or victims in criminal cases, now a burgeoning aspect of the field (Glynn, 2022; Kling et al., 2021). On the other hand, these databases can be used by immigration authorities for the exclusion or restriction of citizenship rights and families’ entitlement to the right of reunification (Heinemann & Lemke, 2014; Helén, 2014). Research institutes and pharmaceutical companies can tap into similar databases to develop profit-oriented research projects with the goal of producing new drugs (Garner & Kim, 2019, p. 1221; Philippidis, 2018).
Most of the secular bioethical deliberations predominantly focus on the domain of direct-to-consumer (DTC) testing, where involved parties actively seek ancestry-related information, thereby leaving minimal room for the incidence of IFs. These deliberations reflect heated controversies surrounding the use of population descriptors (e.g., race, ethnicity, ancestry, etc.) within the broader realms of science and medicine, with a specific focus on genetics. Researchers disagree on whether genetic ancestry information would deliver any health-related benefits and, if so, whether these potential benefits would outweigh the expected harms and risks. Some researchers argue that genetic ancestry can contribute to insights into health outcomes, contending that omitting awareness of race and ethnicity from healthcare practices may exacerbate racial and ethnic disparities. Conversely, other voices express a wide range of concerns and warn against a recurrence of dark episodes in the history of genetics, stemming from malicious employment of racial categories. One of these concerns relates to genetic reductionism and essentialism, where racial disparities, despite the sometimes hazily defined racial categories, may be erroneously attributed to genetics rather than socially determined factors. Researchers from outside the field of genetics argue that these genetic tests remain poor proxy measures of race since they lack representation of the social, cultural, relational, and experiential norms that shape one’s identity. The probabilistic and inconclusive nature of many genetic ancestry estimates is another major concern. So, researchers often question the validity of different techniques, including the above-mentioned GATs, because they are heavily reliant on reference populations in the customer databases of respective companies or institutions. Other concerns have to do with the fear of violating one’s privacy, unauthorized access to, and commercial exploitation of, collected data and potential misuse by law enforcement agencies (Johfre et al., 2021; Jones & Roberts, 2020; Mauro et al., 2022).
The above-mentioned concern regarding the probabilistic and uncertain nature of the genetic ancestry estimates particularly applies to Arab and broader Middle Eastern populations. In this region, data serving as reliable references are either underrepresented or entirely lacking (Al-Ali et al., 2018; Fakhro et al., 2016; Mbarek & Ismail, 2022; Mbarek et al., 2022; Saad et al., 2022; Thareja, 2021; Zhou et al., 2022). To capture the genetic diversity of populations living in the Gulf region, published studies have adopted various ancestry-based classifications and clustering models, which varied from one country to another, and would sometimes differ even within the same country (Alsmadi et al., 2013, 2014; Elliott et al., 2022; John et al., 2015; Mineta et al., 2021; Thareja et al., 2015).
For instance, some studies divided ethnic Qataris into three sub-populations, namely those with a mixture of Bedouin/Arab ancestry, Persian/South Asian ancestry and African ancestry (Fakhro et al., 2016; Hunter-Zinck et al., 2010; Rodriguez‐Flores et al., 2014). Other studies identified six major ancestries in this population, namely General Arabs, Peninsular Arabs, Arabs of Western Eurasia and Persia, South Asian Arabs, African Arabs, and Admixed Arabs (Mbarek et al., 2022, p. 504; Razali et al., 2021). These studies show that the adopted clustering models and classifications are mainly developed for health-related and scientific research purposes to determine the varying levels of susceptibility to health risks (e.g., mendelian disorders, cancer, obesity, or asthma) and thereby trying to improve precision medicine in general (John et al., 2015; Rodriguez‐Flores et al., 2014; Saad et al., 2022). Additionally, the race-based classification in these studies is neither clear-cut nor fixed. Reference to tribes in the Arabian Peninsula was usually cautiously formulated and tribal identity anonymized (e.g., Alsmadi et al., 2014; Hunter-Zinck et al., 2010; Mineta et al., 2021) to avoid ethical violations related to privacy and confidentiality and the potential of genetic stigmatization. By time, more and more data will likely be generated in the future, revealing possible links between one’s tribal filiation and susceptibility to genetic disorders. This would result from different factors, e.g., the increasing volume of genetic and genomic research conducted in the Gulf region and the wide-scale practice of premarital genetic screening that most Gulf countries have made it mandatory by law (Ghaly et al., 2022, pp. 6–10, 17–22).
With the increasing volume of such sensitive genetic data, the likelihood of encountering ethically challenging situations and possible ethical violations would also increase. In June 2014, a study was published in PLOS examining a subgroup of Kuwaiti people with inferred Saudi Arabian tribe ancestry. In July 2014, a revised version of this study was re-published, accompanied by a note from the journal stating that this was “due to the publishing of an incorrect version of Fig. 3 and the release of confidential information,” without specifying the retracted confidential details (PLOS ONE Staff, 2014). In a paper submitted to a meeting held by the aforementioned International Islamic Fiqh Academy (IIFA), the Syrian and Saudi-based cardiologist Ḥassān Shamsī Pāshā also mentioned that some genetic research conducted in certain Arab countries and published in scientific medical journals did not adhere to the principle of respecting “tribal privacy”, when they discussed genetic information about specific tribes. Pāshā, without specifying the studies, noted that some of these studies contributed to stigmatizing certain tribes by disclosing the name of the tribe and place of residence in the context of genetic predisposition to specific diseases (Pāshā, 2017, p. 214, 257). These developments and the associated ethical challenges would likely increase the incidence of IFs related to distant lineage and tribal filiation in the Gulf region. Thus, genetic researchers and clinicians must be cognizant of the pertinent ethical considerations.
By aligning genetic ancestry research with the religio-ethical framing of distant lineage (nasab baʿīd) and tribal affiliation in particular, we draw the following conclusions about the thesis outlined at the beginning of this section. Disclosure of IFs about distant lineage or tribal filiation to an adult and religious accountable individual (mukallaf) whose genome was sequenced is, in principle, reprehensible, and thus should be discouraged. Although usually less significant than one’s immediate lineage or paternity, distant lineage can sometimes have a serious impact on one’s life in different societies in the Arab world, and may influence certain religious rulings. In this context, it does not fit neatly within the category of “recreational” genetics/genomics, as often portrayed in the Western literature on genetic ancestry. Therefore, the disclosure of allegedly misattributed tribal filiation could cause various harms to the concerned person. Besides potential psychological harm, it can also influence one’s entitlement to certain social and political privileges.
Despite the often probabilistic and inconclusive nature of genetic ancestry estimates and resulting health-related information, tribal filiation in Arabic culture and Islamic normativity is not exclusively biological or genetic. As stated previously, it can be based on historical practices of patronage and alliances between tribes. The disclosure of these IFs, we argue in this study, would fall within the category of reprehensible acts, considering these morally significant aspects. However, we do not agree with the opinion holding that the disclosure of these IFs should be categorized as strictly prohibited, as is the case with nonpaternity IFs (Yāsīn, 2019, pp. 113–114). Religiously, morally, and often also culturally, immediate lineage (i.e., paternity) is not identical to distant lineage. Additionally, disclosing the IFs only to the respective person who can autonomously make decisions regarding them is not the same as disclosing them to someone else, potentially jeopardizing the reputation and, in some cases, even the life of the persons involved.
Notes
- 1.
“People, worship your Lord, who created you and those before you, so that you may be mindful [of Him].”
- 2.
“In the creation of you, in the creatures God scattered on earth, there are signs for people of sure faith.”
- 3.
“It is Allah Who creates you in a state of weakness, then gives you strength, then weakness after strength, together with old age.”
- 4.
“It is God who endowed you with hearing, sight, and heart.”
- 5.
“Have We not given him [men] two eyes. And a tongue, and two lips.”
- 6.
“Indeed, We [alone] created man from a drop of mixed fluids, to test them, so We made them hearing and seeing.”
- 7.
“Indeed, We created humans in the best form.”
- 8.
“And indeed, We created man from an extract of clay. Then We placed them as a drop of fluid in a safe place. An then then We made that drop into a clinging form, and We made that form into a lump of flesh, and We made that lump into bones, and We clothed those bones with flesh, and later We made them into another creation––glory be to God, the best of creators.”
- 9.
“And recall when yours Lord said to the angels, ‘I am creating a human our of dried clay, of fermented mud. When I have fashioned him and breathed from My spirit into him, all down to him, fall down to him, prostrating.’”
- 10.
For the list of consulted sources regarding these principles, see Ibn Qudāma (1968, vol. 4, p. 374), Kāsānī (1986, vol. 7, p. 177), Zarqā (1989, pp. 461–464), Sharaf al-Dīn (1987, p. 76), ʿArjāwī (1991, pp. 153–167), Tanṭāwī (1995, pp. 306–308), Jundī and ʿAwaḍī (2005, p. 159, 191).
- 11.
The period between 1993 and 2013 witnessed extensive discussions among Muslim religious and biomedical scientists about the religious ruling on conducting genomic research and genomic medicine. Contributors to these discussions adopted positive attitudes towards the field of genomics in general, to the extent that it was sometimes viewed as a “collective obligation”. For an analytical overview of these discussions, see Ghaly (2018, 2018a).
- 12.
“He has only forbidden you carrion, blood, and the flesh of swine, and what was dedicated to other than Allah. But if someone is compelled by necessity—neither driven by desire nor exceeding immediate need—they will not be sinful. Surely Allah is Ever-Forgiving, Ever-Merciful.”
- 13.
Besides misattributed paternity, scholarly literature also used other terms almost synonymously, including non-parent-expected (NPE) finding, nonpaternal and nonpaternity. See Shepard et al. (2022, p. 2).
- 14.
Firāsh literally means ‘anything spread for one to sit or lie upon’ and particularly a bed upon which one sleeps. In this sense, the husband, wife, or the sleeping bed they share; each of these can be called firāsh (Fayyūmī, 1976, vol. 2, p. 468). In historical discussions, the scope of this term would also cover the slavery-based relationship. Bearing in mind the irrelevance of slavery in the modern context of reproductive technologies and genomics, firāsh will exclusively be used in this study to mean wedlock.
- 15.
In his famous canonical collection of Prophetic traditions, Imam Muslim b. al-Ḥajjāj (d. 261/875) dedicated a section to this topic under the title “Bāb ṣifat maniyy al-rajul wa al-marʾa wa anna al-walad makhlūq min māʾihimā (Chapter on the nature of the man’s and woman’s fluid (semen) and that the child is created from their two waters)”. See Muslim (2003, vol. 1, p. 250).
- 16.
“And those who accuse their own wives [of adultery] but have no witness except themselves, the accuser must testify, swearing four times by Allah that he is telling the truth. And the fifth (oath) that Allah’s curse indeed be upon him if he is of the liars. For her to be spared the punishment, she must swear four times by Allah that he is telling a lie. And the fifth (oath) that the wrath of Allah shall be upon her in case he is telling the truth.”
- 17.
Early and contemporary Muslim jurists used different terms to name each of these two types and highlight the discrepancies between them. For instance, the Mālikī jurist Ibn al-ʿArabī (d. 1148) differentiated between “mere creation (khalq muṭlaq)” to indicate biological relatedness and “confirmed lineage (nasab muḥaqqaq)” to signify the religiously recognized paternity (Ibn al-ʿArabī, 2003, vol. 3, p. 447). However, the late Jordian jurist Muḥammad Naʿīm Yāsīn (d. 2023) used the term biological father (al-abb al-bayuwlūjī) for the former and Sharia-recognized or legitimate father (al-abb al-Sharʿī) for the latter (Yāsīn, 2019, p. 109, note 4). It is worth mentioning that the distinction between genetic and non-genetic paternity is acknowledged by some voices in secular bioethical discourses who differentiate between genetic fatherhood and moral fatherhood (e.g., Draper & Ives, 2009).
- 18.
It should be noted that the notion of extended (multi-year) pregnancy has been universally rejected by contemporary medical experts, emphasizing that such prolonged pregnancies, even if they were to occur, would not result in a viable child. From the early twentieth century onward, discussions between Muslim jurists and biomedical scientists have explored how these developments can be incorporated into Islamic jurisprudence. The prevailing consensus among individual jurists and translational institutions is that the maximum conceivable duration of pregnancy should be forty-seven weeks or three hundred and thirty days, allowing for rare and abnormal cases. For further details, refer to Ghaly (2015, pp. 289–296).
- 19.
This question was examined in secular bioethical discourse (e.g., Draper, 2007; Efut & Chiagoziem, 2021), but I am unaware of studies that addressed it from an Islamic perspective.
- 20.
I hereby would like to submit special thanks to the medical geneticist Fowzan Alkuraya (Chairman, Translational Genomics, Center for Genomic Medicine, King Faisal Specialist Hospital and Research Center) and the geneticist and molecular biologist Said Ismail (Director, Qatar Genome Programme).
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Ghaly, M. (2024). Ethical Judgment of What (Not) to Be Disclosed. In: Islamic Ethics and Incidental Findings. SpringerBriefs in Ethics. Springer, Cham. https://doi.org/10.1007/978-3-031-59405-2_3
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DOI: https://doi.org/10.1007/978-3-031-59405-2_3
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